Lotta Schelin on Huntington’s Disease: Like Long Cold Claws

Of: Kristoffer Bergström

Published: September 30, 2020 kl. 00.14

An unusual disease has been inherited within the family.

In Lotta Schelin’s autobiography, the soccer icon says that her mother is affected, and that she can prove it herself.

“It was as if long, cold claws had driven into my chest,” he writes.

It used to be called dance disease. It is now called Huntington’s disease and it is a rare but difficult diagnosis.

The symptoms can be neurological, motor, cognitive and psychiatric at the same time. Your movements become jerky and uncontrolled. Gets angry, sad, or listless. You speak vaguely and will eventually need extensive care.

The devilish thing is that plants are inherited in half the cases. If Huntington develops, it is fifty to fifty that your child will do later.

Today, only 1,000 Swedes have Huntington’s disease.

One is Lotta Schelin’s mother.

Read in your solitude

The Lyon forward found out when she was 27 and on a quick visit to Gothenburg for a fun weekend. He rummaged through a box, sorting and pulling, when her eyes fell on a letter from the hospital to her mother.

Lotta took a look at him. Huntington confirmed. Wait, haven’t you heard it before? Well, mom told me that she suffered from the same disease as her dad and three of her brothers.

Back in France, Lotta Schelin went against reason and searched the web, clicked on the first best link, went to the next, to the next.

In “On the Head of Lotta Schelin” (Norstedts) she describes the horror of reading in her loneliness about aggressive symptoms and processes.

The book is a winding journey from Kållered to Rio, from men’s soccer to Olympic silver to three Champions League titles. There is talk of determination and scattering of thoughts, rescued titles and forgotten equipment (“In La Manga I forgot to put on a sports bra for a match and my teammates had to stand up and wrap their breasts with an elastic band”).

Has been tired of the brain

In 97 pages comes the chapter “My mother”, where Lotta and the mother alternately tell how the diagnosis affected their family.

“Dad never told me anything about his illness, it was not possible to speak with him. He had four brothers, three of whom also had Huntingtons.

His younger siblings died prematurely, possibly from Huntington, I don’t really know. I only know that none of my father’s brothers had children, they said that the world was too terrible, but my mother told me it was because they did not want to transmit the disease, ”describes the mother.

On the phone, Lotta Schelin recounts how the book came about during walks with Ms. Rebecca while the recording app was running. She has been suffering from headaches for three years after the stroke that ended her career, but she has also been tired. I cannot read, I cannot dig into the skull for knowledge or factual codes.

Recapping his career was a soft start for the memory, like a first race after the holidays.

“I was alone with my thoughts”

– Today I feel good in my daily life. It won’t be 100%, I still have the headache problem and stiffen up when I go out too hard. But it’s easy to accept when you’ve been to the bottom. We’ll see if the last percentage, if they come back in two, three years.

When was the last time you hung a ball in the net?

– Once I took a ball and went a little to the soccer field. My son Kalle had to run across the grass and I did some shots, volleys and passes. The touch was perfectly fine.

This interview is about Huntington’s disease. The year should have been 2011 and you returned to France after your mother told you everything. How were you then?

– I was sitting in an empty apartment, alone with my thoughts and question marks. Everything settled in the heart.

Did you bring anxiety to the plan?

– The first days I was very sad. I was scared. There were so many questions that I didn’t get an answer to. Then it was left as a shame, something small that wears out on one.

Did Lyon help or did you leave them out?

– I kept him completely out of football. It didn’t seem natural to ask anyone in France and the national team was not the basis for me as a player. But my mother had a contact who only worked with Huntington’s disease, so I spoke with that psychologist. That helped.

“It comes from football”

You were little when your grandfather died. Do you have memories of your illness?

– I remember the sister played grandpa once. She sat in her wheelchair and called me. When I arrived, she put her hand on my stool. Mimic grandfather’s involuntary movements.

She laughs. The Schelin family has learned to look for the bright side of the cloud, not to get caught up in the worst forecasts.

Lotta says her parents were visiting just before our interview. Mom is far from her former self, but she moves on, keeps her mood.

He was in his 50s at the time of his illness, but it is common for the footprints to begin to be felt when he turns 35.

Lotta Schelin is 36 years old. There is a fifty percent risk that you are also a carrier of the chromosome change, but more than that, you don’t need to know.

– I have no reason to check if I have something. If the test is positive, nothing can be done yet. The day there is medicine for the brakes or I’ve developed something else that might help, I’ll check it out, she says.

Earlier you said you were scared back in Lyon. For what?

– Yes. At first I was afraid of an aggressive development for my mother, but also of the consequences for me, my sister and the children.

How to put aside the fear of illness?

– It probably comes from soccer. All my life I have known to hold on to the positive. The day I landed the disease exists, that my mother has the gene, so I made sure to put the tank in my backpack. It stays there, I carry it, but I try to focus on something else.

Published: September 30, 2020 kl. 00.14

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